#layingbutslaying

[annieelainey]

As a #LayingButSlaying #Spoonie #CripplePunk #ChronicallyIll #Disabled #Queer, who is currently #InBed right now... I aspire to be as brave and visible, to have as many shots of me in bed as Frida Kahlo so proudly did! #HappyBirthdayFrida! [Image Description: a collage of photos and art of Frida Kahlo laying in bed]

#queer #layingbutslaying #chronicallyill #spoonie #happybirthdayfrida #cripplepunk #inbed #disabled

[annieelainey]

Went into a #POTS-y/#ChronicFatigue nap where it feels like every muscle, bone, and drop of blood in my body is replaced with thick heavy tar and it hurts/burns so badly to raise an arm, to open my eyes, to even open my mouth to speak. It feels like I’m sinking into the earth from the pain and the weight…

Anyway, here is the funny part, I finally got the strength to open my eyes and pick up my phone and I clicked to open my calendar and it was set to May so I thought, “I slept through April?!”

Nope. I did not do that. Thank goodness.

Here is an #InBed selfie. #LayingButSlaying #NoMoreSpoonsJustKnives

[Image Description: a selfie of Annie laying in bed with blue pillows and red sheets wearing a striped tank top and no make up, a white neck pillow around her neck]

#pots #chronicfatigue #inbed #layingbutslaying #nomorespoonsjustknives #in bed

[annieelainey]

[Image Description: two photos of Annie laying in bed under red comforters, a white neck pillow around her neck, her eyes are closed, she is not wearing any make-up, and she looks exhausted, she is wearing a black T-shirt that reads “not all disabilities are visible”]

#InvisiblyDisabledLooksLike

This is the invisible part, the part that is totally isolated with no witnesses (and certainly no one who can adequately explain to you what is happening in my body or how it feels) that if I don’t share in this way, no one would know ever happens.

I had a nice week last week, got out of the house three times and had pretty long outings with some lovely memories and pictures to show for it but today it all caught up with me and took its toll.

New puppy definitely added to what’s happening now, getting up every few hours to cries for the puppy potty or cuddles, chasing after puppy, bending over to pick up accidents or navigate her to puppy pads; it’s a lot of physical labor when you have #EDS/#POTS.

My SI joint/ligaments in my pelvic feel lax causing what feels like burning menstrual cramps (but it’s the space between my joints) and that, along with my herniated discs triggers my lower back pain as well.

The muscles in my legs; my thighs and calves mainly, are throbbing from the prolonged standing I keep trying to do. I’ve been pushing my limits to about 3-5 minutes of standing which makes my legs feel like what I assume typical bodies feel like after holding a squat for an hour for the first time?

But it’s the POTS! Oof! That’s got me down more than the pain does.

You know all those images we’re familiar with of women in corsets and hot weather and falling faint randomly? That’s kind of what POTS looks like but the fainting drags on in this prolonged fatigue where your eyes roll into the back of your head and you can’t get up. Bending down, reaching up, standing, doing any of those things too quickly or too long can trigger these spells.

POTS is considered to be a comorbid condition of EDS because the defective collagen/proteins due to EDS will often cause issues with blood vessels which affect blood flow.

For pretty much any picture where I’m out and enjoying life, the days where I’m in bed like this outnumber them by so much! It can be a lot harder to share these bad health spells for a number of reasons; physical/cognitive ability (we may be passed out, in great pain, and/or with great cognitive impairment), pride/internalized ableism (these times can feel very vulnerable and unappealing), etc. and so I wanted to share this with you while I felt able to.

You’ll never see all of it, just what we choose to share with you, and whatever we share will never be enough to thoroughly express or communicate everything that is happening within our bodies and ourselves.

#invisiblydisabledlookslike #eds #pots #chronic illness #in bed #layingbutslaying

[msfoord]

When you pass out but dogs keep you company ♡ . . . . . . . . . #Syncope #PreSyncopeSarah #Dogs #LayingButSlaying #DogsOfInstagram #Dysautonomia #NeuroCardiogenicSyncope #NCS #POTS #PosturalOrthostaticTachycardiaSyndrome #Pacemaker #YoungAndWired #Disabled #InvisibleIllnesses #InvisibleDisabilities #YoungAndDisabled #GoldenRetriever #LabCross #FurryFriends #DisabledAndCute

#neurocardiogenicsyncope #posturalorthostatictachycardiasyndrome #furryfriends #dogs #pots #invisibledisabilities #presyncopesarah #goldenretriever #pacemaker #disabled #dysautonomia #invisibleillnesses #labcross #dogsofinstagram #younganddisabled #ncs #disabledandcute #syncope #youngandwired #layingbutslaying

[msfoord]

Having a #BadBrainDay. I'm thankful for my new big bed. Makes #LayingButSlaying a little more confortable 😴 #dysautonomia #DysautonomiaAwareness #NeuroCardiogenicSyncope #PostSyncope #PosturalOrthostaticTachycardiaSyndrome #pots #InvisibleDiseases #InvisibleDisabilities #invisibleillness #ncs #pacemakerlife #pacemamer #ChronicIllness #ChronicallyFabulous #Fibromyalgia https://www.instagram.com/p/B4g7UsagNBa/?igshid=1gnn8t5rlbgx2

#badbrainday #layingbutslaying #dysautonomia #dysautonomiaawareness #neurocardiogenicsyncope #postsyncope #posturalorthostatictachycardiasyndrome #pots #invisiblediseases #invisibledisabilities #invisibleillness #ncs #pacemakerlife #pacemamer #chronicillness #chronicallyfabulous #fibromyalgia

[msfoord]

I love these shorts. So proud of myself for making them. It's a beach print! #craftingtogether #spotlight #pattetnsbygertie #beach #summervibes #layingbutslaying

#spotlight #beach #layingbutslaying #pattetnsbygertie #craftingtogether #summervibes

[annieelainey]

I need so many more comfy robes in my #LayingButSlaying #spoonie life. [Image Description: Annie with a calm expression, sitting on a bed with white sheets wearing a white cotton robe] (at JW Marriott Essex House New York) https://www.instagram.com/p/BoUUsAWn-0X/?utm_source=ig_tumblr_share&igshid=hz5bjv69f2dj

#layingbutslaying #spoonie

[msfoord]

#layingbutslaying in my "summer" shorts I made myself. It's sad when going down the road gives you #presyncope #dysautonomia #pattetnsbygertie #spotlight #craftingtogether #thickthighsthinpatience #pots #ncs

#ncs #dysautonomia #thickthighsthinpatience #layingbutslaying #pots #pattetnsbygertie #spotlight #craftingtogether #presyncope

[annieelainey]

I am chronically ill. I spend a lot of time in bed. When I say that, some people respond with "Oh, you're so lucky you get to be in bed all the time." and I am lucky and grateful to be a chronically ill person that HAS a bed and a roof but I know that's not what they're implying. The response suggests that the time I spend in bed is restful, that it is for leisure, but that just isn't true. I'm an ambulatory wheelchair user, I use my wheelchair for anything where I'm expected to stand longer than my limit of about a minute, so around the house and whenever I can, I am pushing my limits and attempting to walk and stand. Pushing my limits, beyond pain, beyond fatigue, costs me. It's a cycle of trying my hardest and get knocked down and into bed and repeat. My hardest may not be a lot to the untrained eye, a flight of stairs is a MOUNTAIN for me (dysautonomia, tachycardia, shortness of breath, possible fainting), 5 minutes of standing is a 2 hour squat for me (fragile joints leave most of the work to the muscles). Today my puppy had two accidents that I had to bend down and clean up; bending down is being hung upside down for 15-30 minutes. Two pee clean ups landed me in bed for the rest of the day. In a society where our value is determined by how much we produce and contribute, I lye in bed riddled with guilt, with a burning desire to get stuff done, not just chores or errands but the things I truly love doing and I can't. My muscles are made of thick burning lava, the world is spinning, my breathing is painfully slow and deep, and my eyeballs keep trying to get a look at my brain and instead sink into the darkness. But from the outside, it just looks like I'm lounging in bed, especially if I end up on my phone in attempts to distract myself. The instinct to look at a person in bed as being "lazy" and judging them for it is not an easy thing to unlearn but I hope that the more we talk about it, the more understanding there will be. [Image Description: two photos of Annie from the shoulder up laying in bed on a red pillow and with red comforters. Text on her forehead reads, "I'm in bed because I need to be" second photo continued, "Not because I want to be" and in the background of the first photo red text with black borders are on her pillow, "EDS, myalgia, arthralgia, injury, chronic pain, POTS, dysautonomia, tachycardia, chronic fatigue, low blood pressure"]

#Chronic illness #eds #pots #in bed #layingbutslaying #Chronic pain #Chronic fatigue #spoonie #dysautonomia